Notes on the journey I didn't plan to take... Motherhood, Melanoma, and making it to my Maserati

Friday, November 21, 2014

Chemo Brain

I have recently and reluctantly discovered that I am experiencing a reasonably common but little talked about medical condition nick-named "Chemo Brain."

Though I have always been fantastic at multi-tasking and typically have abundant energy for professional and social details, I have also been able to laugh at myself for being occasionally dippy, and I am known for forgetful little things such as over-introducing people LOL -oops so you have already met this person I am introducing you to again? Several times? at my house? I chalk that up to social graces and making sure nobody is left feeling uncomfortable not knowing each other. ;-)

But in the past few months I have noticed some uncomfortable changes in myself and my patterns of thinking. A few of my close friends, and my family doctor, spoke to me about my shifts in thinking being more negative than usual, and my depressy and lackluster approach to things seemed to be overpowering my usual cheerful-laugh-in-the-face-of-danger personality traits. Turns out there is medication for that, which I have never taken before in my life, but apparently is commonly prescribed to patients receiving the type of immunotherapy treatments I am. Since taking the meds I am feeling a bit better in the depression side of things, but I am still very aware of the Chemo Brain.

Though I am not taking a traditional chemotherapy (because melanoma does not respond to chemotherapy, it was not offered as an option in my treatment plan), I am indeed taking a chemical treatment that affects the human body head to toe.

Though I don't have the intense nasty physical side effects of what we commonly know about chemotherapy, I do have the same potential for long-term organ and tissue damage, like chemo. It is a risk, but apparently one worth taking. We shall see.

One of those long-term side-effects which I am already finding to be affecting my life is Chemo Brain. For the mothers in my reading crowd, you may be able to relate if you ever had "Baby Brain" during and after pregnancy? It's kind of like that (speaking from experience!).

I took myself to see a fantastic movie in theatres a few weeks ago, and it had an unexpected cancer twist. Without giving away any plot I can tell you that there was one scene where the main character had to openly discuss a health issue he had been hiding from his family and the public. This character was a highly esteemed officer of the law and he did not want to admit his challenges with mental setbacks for fear of losing credibility.

In one scene where he was being interrogated about something very important that he could not recall whatsoever, and his cancer treatment side-effects were being blown open to the public, he easily admitted to the nausea, vomiting, exhaustion, headaches, physical weakness, etc. But when asked about his memory loss and decrease in mental sharpness he defensively exclaimed "But that doesn't apply to me!" This scene stuck in my mind, and I could relate to his reluctance to admit a decrease in mental function. I can tell you about my physical limitations but I don't want to admit to my feeling like I'm losing my mind! I am too strong for that! I can handle this!

Why do we do that? Are we weak if we admit defeat? Are we weak if we admit that we are struggling with something, that we are afraid of the future, if we are afraid that we may never feel back to "normal" again? Are we perceived at losing an edge or not being "positive enough" if we admit that we are not running on full mental capacity? I'm sure there are plenty of mental health studies on that and I don't want to elaborate on mental health at this point, except for how my experience with cancer treatment is affecting mine. It is a real factor, and I have no choice but to be open about it.

My kids notice it the most LOL and they just tease me and take it in stride when I can't finish a sentence without searching my brain files to spit out what I started to say... or when I intend to say one thing and an entirely different thing pops out of my mouth. I think their favourite (beyond my mixing up their names - to their faces - a 12-year long saga of twin parenting I'm sure) is my asking them to please tidy up their broccoli! and make sure their dirty laundry goes from the hamper to the fridge!? Geez Mom you're losing it!!

I am easily exhausted, physically but mentally as well, I find I am overly sensitive to noise, I don't like surprises as much as I did before, I like my peace and quiet alone time even more than before (my best friends all know and lovingly understand and respect what I mean when I say I'm hibernating, but they do haul me out of bed if they feel I have been hibernating too long). I have to write everything down, and I practically carry my calendar around with me to make every note in one place, pink sticky notes and paperclips have made my "calendar" quite thick. Driving my beloved car is a more stressful experience than it has ever been, I have questioned my own judgement a couple of times, which scares me. My eyes get all burny feeling when I talk too much, and I have to lie down flat when the dizzies take over, which makes me angry and frustrated therefore tired and uncommunicative. I find I don't even want to drink anymore (after all this complaining about having to keep my liver clean) I feel uncomfortable with the loss of control even a little fireball or wine causes. Eeek I never thought I would say that!?!

I worry about this side-effect specifically as it relates to my job. I know it has been a while since I have been there.. but believe me I am actually gainfully employed. LOL I am pretty open with my boss about how I am feeling and he seems confident that I will recover and get back my "edge" needed for my busy multi-tasking management position, though I lack that conviction right now and I fear that I will not be able to do my job with the same physical AND mental prowess I had before. Time will tell... until then I am comfortable knowing that I just have to look after my family and their broccoli troubles. And my friends can tease me about re-telling my stories, and enjoy the fact that they can re-tell me theirs because I am largely unaware of what I have already been told. :-)

I'm thinking this is a main reason for this blog... y'all can read about how I'm feeling, and if I repeat myself it's just because you're re-reading. ;-) I can look back on my written word to see if I'm repeating myself. Point for self-preservation - phew!

I found a great article about Chemo Brain and I will share some points from it, in addition to the link to it:

Trouble remembering common words (unable to find the right words to finish a sentence)

"Doctors and researchers call chemo brain many things, such as chemotherapy-induced cognitive dysfunction/impairment, cancer-therapy associated cognitive change, or post-chemotherapy cognitive impairment. Most define it as a decrease in mental “sharpness” – being unable to remember certain things and having trouble finishing tasks or learning new skills. Some doctors call it chemo brain only if it doesn’t go away or get better over time. How long it lasts is a major factor in how much it affects a person’s life. When it starts, how long it lasts, and how much trouble it causes can vary a lot. So the term “chemo brain” is not completely accurate. Still, it’s what most people call it right now.

For most people, brain effects happen quickly and only last a short time. Others have long-term mental changes. Usually the changes that patients notice are very subtle, and others around them might not even notice any changes at all. Still, the people who are having problems are well aware of the differences in their thinking. Many people don’t tell their cancer care team about this problem until it affects their everyday life."

What causes brain problems during cancer treatment?

"Studies suggest that there may be more than one cause of chemo brain, especially for the short-term symptoms. Some people with cancer have very real brain problems even though they have not had chemo. Still others notice problems when getting hormone treatments, such as estrogen blockers or androgen deprivation therapy (treatments to lower testosterone levels). For some, problems start after surgery. Along with chemo, many different things can worsen brain function.

For instance, brain function problems could be caused or worsened by any one or any combination of these factors:

The cancer itself

Other drugs used as part of treatment, such as steroids, anti-nausea, drugs used during surgery (anesthesia), or pain medicines

Low blood counts

Sleep problems

Infection

Tiredness (fatigue)

Hormone changes or hormone treatments

Other illnesses, such as diabetes or high blood pressure

Nutritional deficiencies

Patient age

Depression

Stress, anxiety, worry, or other emotional pressure

Most of these cause short-term problems, and get better as the underlying problem is treated or goes away. A few, such as depression, can cause long-lasting brain problems unless the cause is treated.

So far, there is no known way to prevent chemo brain. For some people, treating their cancer will mean trouble with thinking, memory, planning, and finding the right words."

More about Me:

I am a 41-year old mother of identical twin teenagers. Daughters! As if that's not enough, I am battling cancer: Stage IIIb nodular melanoma AND stage III papillary thyroid cancer, both "in remission" at this time. I have had several surgeries and intense medical treatments, and I remain under "heavy surveillance" as my Oncologists like to call it.

Sharing my experience online helps my family and I cope with this roller coaster ride in a brutally honest and often comical way. I hope it will help others as well! Join the discussion ~ comments, questions, and advice welcome!